10 Youth Brain Child

By BOBBY BURCHHerald Staff Writer

Earlyinhersixth-gradeyear,ShelbyJordanhadgrownaccus-tomedtothepain. Thefamiliarpressureinherhead,thestingsinherupperback,theconstantthrobbingnearthebackofherneck—justanotherheadache,shethought. Thenuisanceappearedsudden-ly,Shelbysaid,andwouldlingerforhours.She’dneverexperiencedheadachesbefore—whynow?Moreimportantly,Shelbywon-dered,whatwasthecause? “[Theheadaches]wereconstantandalwayshurtinthesamespot,”Shelby,now12,said,motioningtothebackofherneck. Herheadachesseemedtoworsenthroughouttheyear,shesaid,andoccurredmorefrequent-ly.Eventually,Shelbybegantofeelsharppainsinhershouldersandthroughoutherback.Thetorment,shesaid,wasworsewithoutexpla-nation. “Theyweren’tlikeregularhead-aches,”Shelbysaid. Notregularatall. Shelby’sbrainwasgraduallysaggingintoherspinalcanal.Amalformationofhercerebellum,thepartofthebrainthatplaysaroleinmotorandcognitivefunc-tions,forcedtheorgantomovedownwardthroughherskull,caus-inghersymptoms. Thecerebraldeformity,alsoknownasa“chiarimalformation,”wasobstructingtheflowofShelby’scerebrospinalfluid,thesubstanceinwhichthebrain“floats.”Certainstudieshavefoundtheconditioncancauserespiratoryfailure,whichkilledone-thirdofpatientsshowingsymptomsinareportpublishedbyCambridgeUniversity. Shelby’sbrainsaggedmorethan

ahalfinch—16millimeters—be-foresomethingcouldbedone.

Discovery Inmid-October2011,KimandScottJordantooktheirdaughtertothefamily’sphysician,whorecom-mendedthattheyseekaneurologi-calspecialist. TheadvicetookthefamilytoChildren’sMercyHospitalinKan-sasCity,Mo.,whereJordanwouldundergoaseriesoftests,includingmagneticresonanceimaging.TheMRIrevealedShelby’sbrainwas

restingonherfirstvertebrae,andthemalformationwasabout0.63inchesinlength,KimJordansaid. Thenewswasdevastating. “IwasatworkwhenIgotthecall,andIwasjuststandinginthehall,bawling,”KimJordansaid.“Itwasjustshock....[Theneurologist]said[themalformation]wasaboutfourtimesmorethanwhattheywantedtosee.” Therearethreemaintypesofchiarimalformations—CMI,IIandIII—whichvaryinseri-ousness,accordingtotheChiariInstitute,basedinGreatNeck,N.Y.Dependingontheseverityofthemalformation,itcanbefatal,al-thoughimprovedsurgicaloptionshavelessenedthatpotential.KimJordansaidherdaughter’smalfor-mation,however,wasunspecified. ScottJordansaidhealsowasstunnedafterlearningofhisdaugh-ter’scondition. “Itwassomethingthatwenever,everexpected,”hesaid.“Ineverthoughtinamillionyearsthat’swhatwascausingtheheadaches.Wethoughtitwasallsomethingdifferent,anditwassomethingjustclearoutoftheblue.” Sucharesponseiscommonwithmanyfamiliesthatencounterthemalformation,asitaffectsonlyabout0.0006percentoftheU.S.population,accordingtotheChiariInstitute.About3,500chiariopera-tionsareperformedeachyear,theorganization’swebsitereports. Shelby’sparentsstruggledwithhowtoapproachthesituation:toeitherletShelbyknow,poten-tiallycausinghermoreanxiety,orchoosetokeepitfromher. Theychosethelatteruntilthestressofthesecretknowledgebe-cametoomuchforthecoupletobear.

Aches expose brAin condition

Photos by Matt Bristow/The Ottawa Herald

Shelby Jordan, 12, and her brother Cooper, 4, swing on playground equipment at their home in rural Franklin County. Shelby enjoys swinging, but can grow tired easily because of her medical condition.

Summer season already casting

shadows at city pool. See Page 7.

iN THe sHADeCyclones opening

season today at Spring Hill.

See Page 8.

BAseBALL

ThursdayMarch 29, 2012Ottawa, Kansas

75 cents Volume 143, No. 63

12 PagesHeraldOttawaThe

THUrsDAy eDiTioN

Shelby Jordan, 12, reads an excerpt from the story she is writing about her experience having a chiari malforma-tion. She had brain surgery in Decem-ber in which a surgeon removed a section of her skull and one vertebrae. Shelby’s shirt reads, “I HAD BRAIN SURGERY, WHAT’S YOUR EXCUSE?”

HeraldTheOttawa

Community News. Community Connections.

By CRYSTAL HERBERHerald Staff Writer

Four out of five Frank-lin County Commissionersdon’tapproveofthecountyclerk’sconduct. Commissioners Wednes-day approved a resolutionformally censuring Frank-lin CountyClerkShariPerry. Theresolutionwas a pub-lic repri-mand ofPerry, whor e c e n t l ywas amongthesubjectsofaconfidentialhumanre-sourcesinvestigation.Thatinvestigationnowhasbeenforwarded to the KansasAttorneyGeneral’sOffice. “The document speaksfor itself,” CommissionerColtonWaymiresaidofthecensure resolution afterjoining with Commission-ers Ed Taylor, Steve Har-risandDonStottlemire topassthemeasure. Commission Chair Da-vidHood,thesoledissent-ing vote, said he opposedthe resolution because he“didn’tagreewithit.” The resolution’s main

pointsread: • The Conduct of theFranklin County Clerk,ShariPerry, isherebycen-sured by this CommissionasunbecomingoftheOfficeof the County Clerk and adistraction from the legiti-matebusinessoftheCountyandCountytaxpayers; •IftheClerkoftheCoun-typersistsinherapparentattempts to interfere withthe employment of countyemployees, the Board ofCountyCommissionerswilltakefurtheractionasnec-essary including the com-mencement of legal actiontoenjoinsuchconduct; •ThatretaliationagainstanyCountyemployee,forco-operating with the KansasAttorneyGeneralwillnotbetoleratedandwillbethesub-jectofitsownpromptinves-tigation pursuant to Countypoliciesandprocedures. The resolution was pre-sented to commissionersWednesdaybyKansasCity,Mo., attorney Kevin Case,wholedthepreviousinves-tigationintoanundisclosedhuman resources matterinvolvingPerryandanun-namedcountyemployee.

Officials voice disapproval of clerk’s conduct

4-1 voTe

By CRYSTAL HERBERHerald Staff Writer

The process isn’t work-ing, Shari Perry said, andshedoesn’twanttofightitanymore. Perry, Franklin Countyclerk, essentially steppeddown Wednesday from herroleasthecounty’sfreedomof information officer. Theotherdutiesassociatedwithherelectedcountyclerkpo-sitionremainunchanged. At her request, Frank-lin County commissionersWednesdaymorningsigneda resolution rescindingPerry’s freedom of infor-mation officer duties andappointed Lisa Johnson,

county administrator andcounselor,tofillthedutiesassociatedwiththerole. A freedom of informa-tion officer is responsibleforreceiving,assessingandsubsequently disclosinginformation in responseto requests. The KansasLegislature requires pub-licagenciescoveredbytheOpen Records Act to ap-pointalocalfreedomofin-formationofficer. Perry was appointed tothepositionbya2005reso-lution.Thecommissioners’Wednesday action repealsthatresolution.

Perry relinquishes county public information duties

APPoiNTeD PosiTioN

See INFORMATION, Page 2

Resolution censures county’s top election official

Perry

See RESOLUTION, Page 12

swinging with the chAllenges

See SHELBY, Page 12

402 N. Main • Ottawa, KS

785-242-5100AdvantageFordOttawa.com

ADVANTAGE

Page 12 The Ottawa Herald Thursday, March 29, 2012

Case more recently has been taskedwith investigating accusations made in ademand letter sent on behalf of Perry tocommissionersearlierthismonth.Thelet-terallegesviolationsofPerry’shealthpri-vacyrightsandrequestsliquidateddam-agesof$175,000.Italsothreatensalawsuitagainstthecountyifactiontocompensatetheclerkisn’ttaken. Casesaidhewasaskedbycommission-ers to prepare the censure resolution,which additionally states “the Board hasreceived multiple complaints addressingtheconductoftheFranklinCountyClerk.” SincePerryisanelectedofficial,com-missionershavenosupervisoryauthorityoverher.Therefore,acensureresolutionwas among their limited options for ex-pressingdispleasurewiththeclerk. CasetoldcommissionersMarch14thathisconcludedhumanresourcesinvestiga-tionfoundmanyallegationsagainstPerry—undisclosedtothepublic—tobetrue.That,coupledwiththecommissioners’in-abilitytoexercisesupervisorypowerovertheclerk,pushedhimtoforwardtheinves-tigationtotheKansasAttorneyGeneral’soffice. Wednesday’s censure resolutionrepeatsCase’searlierassertionaboutthetruthbehindmanyoftheallegations. Perryhasmaintainedshedoesnotknowthedetailsorsubjectoftheinvestigation,nordoessheknowtheallegationstowhichCase has referred. She said she spoke toCaseonlyonceduringthecourseofhisin-vestigation. Still,thelongtimecountyclerk,whosatquietlyastheresolutionwasreadWednes-day,saiditdidn’tsurprisehertolearnthecensureresolutionhadbeendrafted. “I figured therewasaresolutioncom-ing,”shesaidafterthemeeting.“Ifiguredtheresolutionwasgoing toaskmetore-sign, just because they don’t like me be-causeI’mavoiceforthepeople.” Perryidentifiedthe“they”towhomshereferredasCommissionersTaylor,HarrisandWaymire. After reading the full text of the cen-

sure resolution shortly after the meet-ing, Perry said she not only thought thecommissioners’ action was an attempt tosilence her, but also that it infringed onherFirstAmendmentrightoffreedomofspeech. She said she always has tried tomaintain transparency in county govern-mentandsaidsomepeopledon’tlikethat. Perryalsosaidshethoughtthecensureresolution came in retaliation to her de-mand letter and possible lawsuit againstthecounty. “The investigation was over until theygot the letter from my attorney regard-ing [Health Insurance Portability andAccountabilityActviolations]andthenitall started back up again,” she said. “SoI would say that’s retaliation. There’s nootherwayaroundthat.” Fornow,Perrysaid, she’snotgoing tochangeanythingabouthowsheconductsbusinessintheclerk’sofficeinresponsetothecensureresolution.ShesaidnoneofherstaffhasbeeninterviewedforCase’sinvestigation, adding that there are twosidestoeverystory. Wednesday’s censure resolution isn’tthefirsttotargetPerry’sactivitieswithincountygovernment. As a result of Case’s earlier investiga-tion,commissionersadoptedaresolutioninSeptemberbarringdirectcommunica-tion between the Franklin County clerkand the county’s ambulance department.Thatresolutionessentiallywasunenforce-ablebecauseofthecommissioners’lackofsupervisoryauthorityoverPerry’soffice.

“Knowing,forherandI,wasjustthemostunbear-ablethingintheworld,”ScottJordansaid. AbouttwoweeksafterShelby’sdiagnosis,herparentstoldherabouthercondition—andthattheywouldneedtospeakwithaneurosurgeontodiscusstheiroptions. “Ikindoffreakedoutandstartedcrying,”Shelbysaid. Aweeklater,theJordanfamilytraveledbacktoKansasCity.Forthem,sur-gerywastheonlyoption.

A cAthArtic chronicling Tocopewiththeideaofbrainsurgery,ShelbyspokewithherclosefriendandsocialstudiesteacheratCentralHeightsMiddleSchool,KelliBrown.BrownadvisedShelbytoexpressherfeelingsthroughwriting. “Whenshewasstrug-glingwithsomethingsbe-forehersurgery,Itoldherastoryaboutsomebodyinmyfamilyandthattheywereadvisedtokeepajournalandtowritethingsdown,”Brownsaid.“Some-timeswhenyouwritethingsdown,youreaditandyougo,‘Oh.’...It’skindofenlightening.” FollowingBrown’sadvice,Shelbyjotteddownherthoughtseachday.Someexcerpts,shesaid,aresadorangry,whileoth-ersarecomicalandjovial. “Itriedtomakeitalittlefunny,”Shelbysaid.“Inonepart,Isay,‘IknowI’veonlysaidthatIwanttocryaboutamilliontimes—maybeit’ssomethingaboutsurgerythatmakesmesoemotional.’” Shelbysaidthewritingprocess,whicheventuallyproducedmorethan26pagesoftext,helpedtoexpressherfeelingsasthedateofhersurgeryap-proached.

BAd things just ‘pArt of life’ OnthemorningofDec.6,2011,theJordanfam-ilytrekkedtoChildren’sMercyHospitalforShel-by’ssurgery.

“Iwaskindoffreakingout,”Shelbysaid.“Ihadneverhadsurgerybefore,sothenIjusthadtostartwithbrainsurgery,sothatwaskindofscary.” Theoperationtookmorethansixhours,leav-ingKimandScottJordananxiouslywaitingnearby.Theneurosurgeonsuc-cessfullyremovedShelby’sfirstvertebraeandapieceofherskullthroughafour-inchincisiononthebackofherneck. She’drecoverinthehos-

pitalforfivedaysbeforereturninghomeandwouldmissnearlyamonthofschool. Thetotalbillofthesurgerycostthefamily$95,000,KimJordansaid.Shesaidseveralcommu-nitymembersorganizedabenefiteventandraffleforthefamily,whichhelpedtoraiseabout$5,000. Followingthesurgery,Shelby’sspiritsremainedhighandherhealthim-proved.Shesaidsoonherheadachesandothersymp-

tomsdisappeared.Allthat

remainedwasafour-inchscaronherneckandtheyearningtoreturntoherclasses. “Itwaskillingme,”Shelbysaidofmissingherstudies. Eventually,Shelbyre-turnedtoherclassmates,whoknewofherconditionandsentplentyofget-wellcards. “Theywereverycon-cerned,”Brown,Shelby’ssocialstudiesteacher,said.“WhenwefoundoutthatShelbyhadhersurgeryandshewasfine...therewasabighooray.” Shelby’sdoctorsplacedseveralrestrictionsonheractivitiesanddiet,limit-ingherphysicalexerciseandrequiringshedrink

plentyoffluids.Shealsoisprohibitedfromeatinganyfoodscontainingmonoso-diumglutamate,acommonfoodadditive. Thefamilyplanstore-turntothehospitalApril25forafinalMRIthatwillshowifShelby’smalforma-tionhasdiminishedsincethesurgery. Untilthat’sconfirmed,Shelby’srestrictionsre-main. Despiteherlimitations,Shelbysaid,shedoesn’twanttobetreatedanydif-ferently. “Alotofpeoplemakeitabigdeal.‘Ohshehadbrainsurgery,shecan’tdothis.Ifeelsobadforher,’”shesaid.“ButIdon’tthinkit’sabigdeal.Ijustthinkit’spartoflifetohavebadthingshappentoyou,Iguess.” Shelbysaidsheplanstopublishherbook,“TheChiariChronicles:TheStoryofMyBrainSur-gery,”andnowisseekingapublisher.ShesaidBrownhasinspiredherfuturecareerambitions—shewantstobecomeaschoolteacher. Besidesearningascar,Shelbysaid,she’stakensomelifelessonsfromtheexperience. “Iknownowthatalotofthingscanbescary,”Shelbysaid.“Butitjustdependsonhowyoulookatit.”

resolution: Clerk says ‘retaliation’(Continued from Page 1)

Since Shari Perry is an elected official, commissioners have no supervisory authority over her. Therefore, a censure resolution was among their limited options for expressing displeasure with the clerk.

Photo by Matt Bristow/ The Ottawa Herald

12-year-old Shelby Jordan, left, is shown Monday with her parents, Kim and Scott, younger brother, Cooper, 4, and puppies, Bolt the Super Dog and Charlie Brown, at her home southeast of Ot-tawa. Shelby has been stay-ing at home, only attending school a few days a week, after having surgery for her chiari malformation.

shelBY: ‘I kind of freaked out and started crying,’ Central Heights student says(Continued from Page 1)

Normal Chiari I Malformation

Cerebellum Cerebellum

CSF Spaces

Spinal Cord Cyst in Spinal Cord

Herniated Cerebellum

Shelby’S condition: chiari malformation

Image courtesy of the Chiari Institute